Can't get rid of these symptoms after 2 years

[Cgt1151]

I am 71 years old and have always been very active. I take care of my husband who is partially disabled. It will be 2 years next month since I was diagnosed with PMR and 3 months later GCA. Initially I was prescribed 20 mg for 4 weeks, then taper by 5 mg every 2 weeks . Within 2 days I felt like a new person. The neck, shoulder, hip, thigh and knee pain were almost gone. I could actually walk normal again and could turn over in bed without incredible pain. I thought I was on the road to a quick recovery. However when I became very sick in May 2020 I was diagnosed with GCA in my left temporal artery after a positive biopsy. Prednisone was increased to 60 mg. Since then I have been trying to taper and with multiple flare ups I got down to as low as 5 mg. Though I must admit I did not feel well at 5mg. But not as bad as I did when I was diagnosed. My rheumatologist keeps telling me my inflammation markers look great. Well, the day after Christmas I tested positive for Covid and shortly after that I started feeling increased pain and stiffness( though I have to say, the morning stiffness has never really gone away). About 3 week's ago I started to have a headache reminiscent of the one I had when diagnosed with GCA. The pain is in the left side of the back of my skull and my scalp is sore as well. I am still having this headache. My doc sent me for labs and the sed rate went from 2 to 23, but is still within the normal range. He told me to increase to 10mg. Has anyone who has been diagnosed with GCA ever experienced a headache that lasts for an extended time after a flare up? My PMR symptoms are better than they were prior to the increase, but not as good as when I first started my journey with 20 mg of Prednisone. I had really hoped after 2 years I would be in a better place than I am. Looking for some encouraging thoughts. Thanks in advance for any comments. Everyone on this site is so helpful.

[PMRpro Ambassador]

The fact your sed rate went from 2 to 23 "but is still in normal range" shows someone doesn't understand normal range. Normal range is the range of readings found in 95% of a large population, 10,000 is a reasonable size, of apparently healthy people, both male and female. The ranges for women and men are slightly different. It is not a range that is acceptable in a single patient. Sed rates should be checked again - to establish a trend, not just "that's in normal range".

That your sed rate rose from 2 to 23 shows YOU have increasing inflammation present in your body. Many patients don't show increases while still on pred - or they are very delayed. Symptoms ALWAYS trump lab results. You have symptoms, and since some are indicative of GCA - you need a darn sight more than 10mg. You probably won't need a full 60mg but you do need more, enough to manage the GCA symptoms.

I'd say that the most common duration of pred management being required for GCA is 4 to 5 years. Two years is really an exception - whatever doctors try to say.

[DorsetLady PMRGCAuk volunteer]

hi,

As PMRpro says, if your headache is GCA, and certainly sounds as if it is, then you need more than 10mg...

..and if you have had multiple flares then that is indicative of too fast a taper all the way through whether you rheumy likes it or not. Strikes me he is of the school of "PMR and /or GCA only lasts 2 years". It may for some, but for a heck of a lot of patients it lasts longer...so he should be treating you by your symptoms, not the calendar!

Your sed rate may be within "normal range" but they have increased significantly, and he should be addressing that as well...

..new rheumy required methinks...and certainly more Pred - if only as a trial to ascertain the headache is GCA, and not a hangover from Covid.